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INTRODUCTION: Congenital diaphragmatic hernia (CDH) is readily prenatally diagnosed and associated with significant perinatal morbidity and mortality. Delivery at facilities with adequate resources for neonatal resuscitation, such as Children's Surgery Verification (CSV) centers, is recommended; however, disparities have been clinically noted. We aimed to characterize locoregional care of CDH and the impact of race and ethnicity. METHODS: We conducted a population-based study using the Texas Inpatient Public Use Data File to identify infants <1 y-old with CDH based on international classification of diseases 9/10 codes (2013-2021). Only initial birth admissions in the Houston region were included. Data was analyzed using descriptive statistics and chi-squared analysis. RESULTS: We identified 257 newborns with CDH. While births were noted across 29 facilities, the majority were at the 2 CSV centers in Houston. There was no significant difference in illness severity, prematurity or insurance status by race. Black and 'other' patients were less likely to deliver at CSV facilities (Black 32% versus 'Other' 48% versus White 70% versus Asian 81%; P < 0.01), receive ECMO (Black 6% versus 'Other' 5% versus White 19% versus Asian 29%; P < 0.01) or undergo a CDH repair (Black 26% versus 'Other' 33% versus White 51% versus Asian 71%; P < 0.01) on their index admission and had lower average daily costs (Black $10,292 [$3219-25,021] versus 'Other' $9106 [$3617-15,672] versus White $12,906 [$9038-18,550] versus Asian $12,896 [$7469-23,817]; P < 0.05). Additionally, black and 'other' patients were more likely to be transferred (Black 23% versus 'Other' 28% versus White 12% versus Asian 14%; P < 0.05). None of the patients born at CSV centers transferred. CONCLUSIONS: Most Houston-born patients deliver at high-resource centers; however, Black and 'other' patients are less likely to deliver at CSV centers and more likely to require transfer during the critical neonatal period. This suggests a vulnerable population which may benefit from targeted intervention to improve prenatal care and delivery planning.
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INTRODUCTION: Spina bifida (SB) occurs in 3.5/10,000 live births and is associated with significant long-term neurologic and urologic morbidity. We explored the characteristics and outcomes of pediatric patients with SB and the facilities that treat them in Texas. METHODS: We retrospectively reviewed a statewide hospital inpatient discharge database (2013-2021) to identify patients aged <18 y with SB using International Classification of Diseases 9/10 codes. Patients transferred to outside hospitals were excluded to avoid double-counting. Descriptive statistics and chi-square test were performed. RESULTS: Seven thousand five hundred thirty one inpatient hospitalizations with SB were analyzed. Most SB care is provided by a few facilities. Two facilities (1%) averaged >100 SB admissions per year (33% of patients), while 15 facilities (8%) treat 10-100 patients per year (51% of patients). Most facilities (145/193, 75%) average less than one patient per year. Infants tended to be sicker (17% extreme illness severity, P < 0.001). Overall mortality is low (1%), primarily occurring in the neonatal period (8%, P < 0.001). Most admissions are associated with surgical intervention, with 63% of encounters having operating room charges with an average cost of $25,786 ± 24,884. Admissions for spinal procedures were more common among infants, whereas admissions for genitourinary procedures were more common among older patients (P < 0.001). The average length of stay was 8 ± 16 d with infants having the longest length of stay (19 ± 33, P < 0.001). CONCLUSIONS: Patients have significant long-term health needs with evolving pediatric surgical indications as they grow. Pediatric SB care is primarily provided by a small number of facilities in Texas. Longitudinal care coordination of their multidisciplinary surgical care is needed to optimize patient care.
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Disrafia Espinal , Humanos , Disrafia Espinal/terapia , Disrafia Espinal/mortalidad , Texas/epidemiología , Estudios Retrospectivos , Femenino , Niño , Masculino , Lactante , Adolescente , Preescolar , Recién Nacido , Tiempo de Internación/estadística & datos numéricos , Tiempo de Internación/economía , Hospitalización/estadística & datos numéricos , Hospitalización/economía , Resultado del TratamientoRESUMEN
INTRODUCTION: The American College of Surgeons Children's Surgery Verification (CSV) status recognizes hospitals that deliver high-quality pediatric surgical care. Texas has 5 CSV centers in three cities, which may limit equitable access to care. We explored the characteristics and outcomes of infants admitted in Texas as a function of facility CSV status. MATERIALS AND METHODS: We retrospectively reviewed a state-wide hospital discharge database (2013-2021). All patients <1 y of age were included. Patients transferred to an outside hospital were excluded to avoid double counting. Descriptive statistics and chi-square analysis were performed. RESULTS: We analyzed 3,617,173 admissions, with 211,278 (6%) treated at CSV centers. CSV admissions were less likely to be inborn (46% versus 93%) and more likely to be transfers (16% versus 1%). CSV centers also had sicker patients (32% versus 13% extreme illness severity) with higher mortality rates (1% versus 0%), longer length of stay (9 ± 22 versus 4 ± 9), and higher operative rates (33% versus 20%). However, mortality was lower at CSV centers when matched for illness severity. Proportionately more patients from rural counties (9% versus 4%) and counties along the United States-Mexico border (13% versus 1%), as well as patients of Hispanic ethnicity (39% versus 33%), were treated at non-CSV centers. Meanwhile, proportionately more African Americans (21% versus 11%) were treated at CSV centers. CONCLUSIONS: CSV centers are associated with improved outcomes among patients with high illness severity. Population differences among patients treated at CSV centers compared to non-CSV centers may represent disparities in access to care and warrant further evaluation.
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INTRODUCTION: Fetal surgical anomalies cause significant anxiety. Following the diagnosis, prenatal counseling with shared decision-making occurs. Empowerment is an essential component of shared decision-making. The purpose of this mixed-methods study was to evaluate the association between patient empowerment with depression and anxiety among patients with fetal surgical anomalies. METHODS: An explanatory mixed-methods study was conducted at a large tertiary fetal center among patients with recently diagnosed surgical fetal anomalies from May, 2021 to May, 2022. Validated cross-sectional surveys were used to collect quantitative data regarding patient empowerment, depression, and anxiety. Univariate analysis was used to compare the association of maternal empowerment with depression and anxiety. Qualitative data was obtained from semistructured interviews to explore maternal anxiety and depression relative to the fetal diagnosis. Thematic analysis was performed to identify themes. RESULTS: Seventy-four patients were recruited for the quantitative study. Pregnancy-related empowerment score and patient empowerment score were significantly lower for expectant mothers with high anxiety (P < 0.01). Eighteen patients participated in qualitative interviews. Participants expressed significant anxiety related to their fetal diagnosis. Exacerbating stressors included social determinants, personal history of miscarriage, and changing family dynamics. CONCLUSION: Our results suggest there is an association between increased depression and anxiety with lower empowerment. These findings have important implications for prenatal counseling, as targeted interventions to improve psychosocial support to treat depression and anxiety might also improve empowerment.
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INTRODUCTION: COVID-19 spurred an unprecedented transition from in-person to telemedicine visits in March 2020 at our institution for all prenatal counseling sessions. This study aims to explore differences in demographics of expectant mothers evaluated pre- and post-telemedicine implementation and to explore the patient experience with telemedicine. METHODS: A mixed methods study was completed for mothers with a pregnancy complicated by a fetal surgical anomaly who visited a large tertiary fetal center. Using medical records as quantitative data, patient information was collected for all prenatal visits from 3/2019 to 3/2021. The sample was grouped into pre- and post-telemedicine implementation (based on transition date of 3/2020). Univariate analysis was used to compare demographics between the study groups. Statistical significance was defined as P < 0.05. Eighteen semi-structured interviews were conducted from 8/2021 to 12/2021 to explore patients' experiences. Line-by-line coding and thematic analysis was performed to develop emerging themes. RESULTS: 292 pregnancies were evaluated from 3/2019 to 3/2021 (pre-telemedicine 123, post-telemedicine 169). There was no significant difference in self-reported race (P = 0.28), ethnicity (P = 0.46), or primary language (P = 0.98). In qualitative interviews, patients reported advantages to telemedicine, including the convenience of the modality with the option to conduct their session in familiar settings (e.g., home) and avoid stressors (e.g., travel to the medical center and finding childcare). Some women reported difficulties establishing a physician-patient connection and a preference for in-person consultations. CONCLUSIONS: There was no difference in patient demographics at our fetal center in the year leading up to, and the time following, a significant transition to telemedicine. However, patients had unique perspectives on the advantages and disadvantages of the telemedicine experience. To ensure patient centered care, these findings suggest patient preference should be considered when scheduling outpatient surgical counseling and visits.
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COVID-19 , Telemedicina , Humanos , Femenino , Embarazo , Telemedicina/métodos , Prioridad del Paciente , Consejo , Derivación y ConsultaRESUMEN
INTRODUCTION: Congenital diaphragmatic hernia (CDH) is a life-threatening, prenatally diagnosed congenital anomaly. We aim to characterize care and outcomes of infants with CDH in Texas and the impact of treating facilities volume of care. METHODS: Retrospective cohort study using a state-wide Hospital Inpatient Discharge Public Use Data File was conducted (2013-2021). Neonates and infants <1 year of age were included using CDH ICD-9/ICD-10 codes. Neonates transferred to an outside hospital were excluded to avoid double-counting. Descriptive statistics, chi-square and logistic regression analysis were performed. RESULTS: Of 1314 CDH patient encounters identified, 728 (55%) occurred at 5 higher volume centers (HVC, >75 cases), 326 (25%) at 9 mid-volume centers (MVC, 20-75 cases) and 268 (20%) at 79 low volume centers (LVC, <20 cases). HVC had lower mortality rates (18%, MVC 22% vs LVC 27%; p = 0.011) despite treating sicker patients (extreme illness severity: HVC 71%, MVC 62% vs LVC 50%; p < 0.001) with longer length-of-stay (p < 0.001). Extracorporeal membrane oxygenation was used in 136 (10%) and provided primarily at HVC. LVC treated proportionately more non-white Hispanic patients (p < 0.001) and patients from counties along the Mexican border (p < 0.001). The predicted probability of mortality in CDH patients decreases with higher treatment facility CDH case volume, with a 0.5% decrease in the odds of mortality for every additional CDH case treated (p < 0.001). CONCLUSIONS: Patients treated in HVC have significantly lower mortality despite increased severity. Our data suggest minority populations may be disproportionately treated at LVC associated with worse outcomes. TYPE OF STUDY: Retrospective Prognosis Study. LEVEL OF EVIDENCE: Level II.
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Oxigenación por Membrana Extracorpórea , Hernias Diafragmáticas Congénitas , Recién Nacido , Lactante , Humanos , Hernias Diafragmáticas Congénitas/terapia , Estudios Retrospectivos , Pronóstico , ProbabilidadRESUMEN
BACKGROUND: Women with pregnancies complicated by fetal surgical anomalies experience significant psychosocial burden. There remains a need to determine the impact that socioeconomic status has on maternal empowerment, anxiety, and depression. METHODS: A survey study was conducted from 5/2021-5/2022 to quantify empowerment, anxiety, and depression in women with fetal surgical anomalies. Surveys administered included Pregnancy Related Empowerment Scale (PRES), Patient Empowerment Scale (PES), State Trait Anxiety Inventory (STAI), and Depression Anxiety and Stress Scale (DASS). Two-sample t-test was used to compare survey scores across socioeconomic groups. RESULTS: Seventy-four patients were recruited. Mothers more commonly preferred English as primary language (n = 61, 82%) and were non-Hispanic (n = 43, 58%). Lower empowerment scores were observed in Hispanic mothers (PRES, p = 0.03; PES, p = 0.04) and mothers who preferred Spanish (PRES, p = 0.04; PES, p = 0.06) as primary language. Both non-Hispanic (p = 0.88) and English speaking (p = 0.75) women had higher STAI scores, but neither was significantly different. DASS was not significantly higher for Hispanic (p = 0.79) or Spanish speaking mothers (p = 0.47). CONCLUSION: Hispanic and Spanish speaking women with pregnancies complicated by fetal surgical anomalies have significantly decreased empowerment scores. These findings suggest a need for development of culturally competent, targeted interventions to improve maternal empowerment in this high-risk population. LEVEL OF EVIDENCE: Level II. TYPE OF STUDY: Cross-Sectional Survey Study.